Nurses interviewed for this study described great variability in how MAiD had been enacted within their geographic and work context and how that variability had influenced their experiences with MAiD. This variability was largely influenced by three themes: (1) the leadership taken by influential persons within systems, (2) the presence and nature of a multi-disciplinary team, and (3) the systems’ complexity and capacity to support MAiD.
Systems: influential leaders setting the tone
Nurses described work contexts that ranged from a virtual absence of any MAiD-related guidelines to highly structured systems in which a comprehensive set of supports existed to guide nursing practice. In some contexts, policies and procedures were established fairly quickly. For example, one participant described how, after the legislation was passed, key leaders in the health region immediately established a working group to work intensively over a weekend to construct the policies and procedures that would guide immediate practice. However, in other contexts those first MAiD cases were done with little direction, “We really had no idea what we were doing because we hadn’t actually made any policy or guidelines yet.” P42 Even many months after the legislation, some nurses were still working within a healthcare policy and procedure void. These findings were similar for both registered nurses and nurse practitioners, although nurse practitioners had the structure provided for them within Bill C-14. Nurses, however, sometimes found themselves trying to assist in a MAiD procedure with no practice guidelines in their places of work. This created uncertainty in their practice, particularly when nurses remained the primary caregivers of patients contemplating or undergoing MAiD, which also involved high levels of interaction with their families. “So, my big concern is if someone does approach me with a written request, what do I do from there? And I know the health region has developed no policies pertaining to what the process is.” P26.
Much of this variability in the degree of practice support was a result of the decisions (or lack of decisions) made by persons in influential leadership positions either immediately preceding or following the legalization of MAiD. For example, one participant mentioned that a change in government soon after the Carter decision had slowed down the development of MAiD guidelines in their province which in turn heighted the perception of risk. “With the change in government, things were a little bit stalled and questions weren’t necessarily being answered. I think there were a lot of physicians and NPs maybe a little bit nervous about how things were working.” P1 Some health authorities assigned key individuals to lead the development of practice supports. A number of innovations were developed, including regional interdisciplinary MAiD teams, designated persons to work alongside and support individuals considering whether to undergo MAiD, and therapeutic interventions designed to address the underlying suffering that had contributed to a MAiD request. However, leaders also developed organically as they championed the MAiD process. For example, this nurse participated in a provision while her clinical leader was away. “Because she was away, I informally became the leader of MAiD on our unit.” P50.
Leaders responsible for palliative care were particularly influential in the development of structures and processes to support MAiD. The beliefs of these leaders about the acceptability of MAiD, its fit with palliative care, and perhaps most importantly, their recognition that MAiD would generate a range of moral responses in their colleagues, determined the direction and outcomes of these practice supports. For example, in one jurisdiction, MAiD assessment responsibilities were assigned to nurse practitioners who were engaged in palliative care. This decision meant that palliative care and MAiD were both integrated within nursing responsibilities. As logical as this decision seemed from a workflow perspective, it resulted in unique tensions, particularly for those palliative nurses who objected to MAiD due to either their moral values or their beliefs about its fit with a palliative care philosophy.
Another example of influence was how leaders constructed workplace policies to support a range of moral responses to MAiD. We specifically use the term ‘range of moral responses,’ rather than conscientious objection, to reflect the uncertainty about MAiD that was characteristic of nurses in this study. Few openly declared themselves as conscientious objectors; instead, more were uncertain about how they felt about MAiD. Nurses described workplace policies that varied dramatically in how they accommodated their nurses’ willingness, or not, to participate in MAiD and the uncertainty that caused. At one end of the spectrum, nurses were allowed to take a day off without pay if they were uncomfortable with MAiD and it was occurring on their unit. At the other end of the spectrum, nurses were expected to provide all non-MAiD related care, no matter how they felt about MAiD. These policies reflected very different approaches to nurses’ moral well-being. As employees of healthcare, nurses felt they had little control over the ways in which their workplaces were structured to accommodate their comfort level with MAiD. For example, one nurse stated, “we need some sort of support groups or guidelines for conscientious objectors. I have heard that other countries have more lenient processes for conscientious objectors so that they don’t feel stigmatized.” P54.
Nurses perceived physicians, and in particular palliative physicians, to be important influencers in how MAiD processes developed. For example, one participant described how the medical director influenced the implementation of MAiD on her palliative unit. “Our medical director at the time wasn’t on board and that trickled down to all of us.” P57 Unlike nurses who were employees of healthcare, physicians were perceived as having more latitude to choose whether, how, and to what extent they would support the MAiD process. In some cases, nurses described how physicians worked with them to seamlessly integrate MAiD with palliative care. In other cases, nurses described physicians who erected barriers to patient involvement with MAiD. These barriers could include telling patients that they were not quite ready for MAiD, or suggesting that it could not be done in the community where patients were living, or simply ignoring patient requests. The strongest type of physician resistance described by participants was the withdrawal of palliative care services once a patient had chosen MAiD. This withdrawal of services made it difficult for nurses to support good pain and symptom management while the patient was awaiting MAiD. Nurses responded strongly to this withdrawal of palliative services: “So we have a serious practice issue here. I’m mad as hell.” P24.
However, participants also suggested that relationships between those who provided palliative care and those who provided MAiD were becoming more congenial over time. “
We have come a long way because people are not so angry or defensive.” P31 In some cases, this was because MAiD teams had been formed outside of palliative care teams and they had learned to work together. In other cases, palliative clinicians were becoming more comfortable with MAiD as an option, either within or outside of palliative care. Despite this apparent easing of relationships between MAiD and palliative providers, there remained significant concerns related to the inadequacy of palliative care systems in Canada and the impact that MAiD could have in the face of this inadequacy. For example, one participant suggested that the workload generated by MAiD could be a significant barrier for palliative care clinicians who were already working to maximum capacity. Another participant suggested that palliative care, which already carried a fair bit of stigma because of its relationship to death, would become further stigmatized with the introduction of MAiD. Ultimately, this perception would lead to even less acceptability and uptake of palliative care by patients. But what created wider concern for nurses was the inadequate accessibility to palliative care services for some patients in Canada. Under
Bill C-14, clinicians are required to offer palliative care to clients who are considering a MAiD death. Participants reflected on the irony of how much attention had gone into supporting accessibility to MAiD without corresponding attention paid to overall accessibility to palliative care. “
We use this rhetoric that it’s somebody’s right to die and I don’t want to debate that part but I think it’s also their right to have access to care done by clinicians who are knowledgeable about palliative care.” P23 This participant was reflecting on the paucity of specialized palliative care but also on the lack of palliative care knowledge within primary care where most palliative care happens. This same participant went on to describe how providers’ lack of palliative care knowledge unwittingly contributed to patient suffering. This tension between a system that caused undue suffering because of ignorance of good palliative care, and a system designed to relieve that suffering through MAiD, put this nurse in an intense state of tension:
This is the crazy thing for me to consider … it's a shame and it's something that I grieve to think that our system, as it is, can contribute so much to the suffering of somebody on so many different levels. … on top of whatever illness process that is causing suffering. But that our health care system contributes to suffering, and is doing nothing about our own contribution to that suffering, but then uses that very suffering to activate access to MAiD. It's absolutely ridiculous to me. P23
In light of the tensions between palliative care and MAiD, participants had thoughtfully considered what they thought might be the ideal relationship between the two systems. One participant described it as “parallel lines with crossover points.” P24 MAiD providers would work along one continuum while palliative care providers would work along the other continuum. But, if and when a client should choose to cross over from palliative care to MAiD, then palliative care would continue as an unbroken commitment to patients.
In summary, nurses in this study were working within systems that differed greatly in their response to MAiD. Some were highly organized whereas others were devoid of policies, procedures, and formal direction. Much of this variability was attributed to the way in which influential leaders, particularly those with responsibilities for palliative care, had chosen to approach MAiD. Further, perspectives of these influential palliative leaders had in turn been influenced by the broader challenges of palliative care accessibility in the Canadian context.
Teamwork: Two’s a team
Nurses in this study participated in MAiD teams to varying degrees. At one end of the spectrum, nurses worked in isolation, being lone assessors and/or providers who worked only peripherally with other assessors and providers. At the other end of the spectrum were nurses who were integrated into well-connected teams dedicated to providing MAiD. In the middle were nurses who worked organically and closely with a few physicians but who were outside of a formal team structure. Even as they found themselves with varying degrees of team support, participants described teamwork as essential to a successful MAiD process. MAiD was a new procedure, and participants described the time it took for physicians and nurses to create a MAiD process that worked well and to feel comfortable with that process. Nurses suggested that, at minimum, two people should be present at every provision of MAiD, one to do the provision and one to look after family and friends and to troubleshoot situations that arose during the process. Having a second person was particularly important in light of the impactful nature of the experience and the need to ensure a seamless, trouble-free provision. For example, this nurse talked about a difficult provision and the importance of a supportive physician. “
It was just me, the doctor and the patient and it was a bad feeling, dark, no windows. Afterward I had to wait for the funeral home and I said to the physician, ‘you can go.’ He said, ‘I’m not leaving you.’ So, it was just so nice to have that support from the physician.” P37 As physicians were often “
piloted in” to perform the procedure, it was the nurses who ultimately learned what worked well and who were often in a position to provide support and mentorship to those physicians who performed the procedure less frequently. For example, one nurse remembered supporting a physician through his first provision:
What struck me about that day was my physician colleague, how his hands were shaking. And I remember putting my hand on his shoulder and just kind of nodding because we were there together and he had never done this before but we had spent a lot of time together previously. P1
In the latter part of this quote, the nurse acknowledges that it was her previous relationship with the physician that allowed her to support him better. These supportive relationships within the MAiD team were acknowledged as an integral part of the process of a successful MAiD provision. Relationships facilitated the ability to know how each person would respond to such an impactful event, the ability for the nurse to step in and troubleshoot without offending the physician, and the ability to effectively debrief after the process. For example, this nurse described an experience of working with a physician who was unwittingly excluding the family’s access to the patient at the last moment, but she did not feel that she and the physician had enough of an established relationship for her to correct him:
She [the client] was turned towards him [the physician] and her family was at her back and I thought what a shame that we couldn't take a moment and turn her to her family. But that was the first time I'd worked with that clinician. I didn't have any relationship with him at all. P2
Another participant spoke of supporting a physician new to the MAiD process who was concerned that the patient had not died after administering the medication. Even though the nurse was certain that the patient had died, she took the stethoscope and listened for the heartbeat for a prolonged period of time so that the physician would be reassured. Such examples told a compelling story of the need for mutual support throughout the process of MAiD provision.
Participants also reflected on who might be excluded from the team, but who would nevertheless be deeply impacted by a MAiD death. For example, intravenous (IV) team members play an important role in the establishment and maintenance of the IVs upon which the success of MAiD administration rests. IV team members often establish the IV many hours before the provision to ensure that it is ready. During this insertion they often visit with patients and hear their story. As one nurse described it, you don’t put in the IV before you establish the relationship. But, even though these IV team members had established a relationship with the client, they did not have the team support when the client went on to receive MAiD. This nurse described encountering one such IV nurse. “I remember an IV nurse starting an IV and for some reason she was waiting outside the door, the door was closed. I can’t remember exactly why but she was crying and I comforted her but, you know, she does not get the support we get on the unit.” P6.
Privacy issues attaching to disclosure of a MAiD death also influenced who received support as part of the team. Home care nurses, acute care nurses, and residential care aids and nurses were frequently left out of the process for privacy reasons. Home care nurses described caring for long term clients who were not imminently dying and then being notified that they had suddenly passed away. The nurse would then follow up with the family and would be told that the client had received MAiD. It was not uncommon for these nurses to wonder why patients and families had not discussed this option with them, particularly in light of their long-term relationships. Nurses in general experienced this as being left out of the loop and, in some cases, it changed their practice in relation to MAiD:
We had no idea they [clients and family] were thinking about it or mentioning it and no one had a clue and we’d just get notified that they’d passed away, which was really bizarre in the beginning. So, I think that was a turning point for me to make sure they knew all of their options and that they felt safe discussing all of their health with me. And no matter what they chose, they had those options on the table and that they could feel supported through the whole process if that’s what they chose. P12
Stories from residential care were particularly challenging because of the close and enduring relationships that exist between clients and care aides. Clients might choose to keep their decision to access MAiD private, in part because they did not want to spend their last day saying goodbye or justifying their decisions. However, care aides were then taken by surprise by the death:
Her request was not to tell any of the staff members until afterwards. Her care aides took that very poorly because they didn’t know. They were with her right to the last minute and it was a normal day. They took her to dinner, they took her out for a smoke, they took her back to her room. But then, they were told that she had died. P28
So, while teamwork was considered the ideal of care, many were left out of the team for various reasons, and as a result did not receive the supports that those who were directly involved in the MAiD team experienced. Further, because MAiD was an impactful experience, those who had learned to work well together formed strong teams that were difficult for others to break into. For example, much of the MAiD referral process across Canada involves a centralized coordinator, often a nurse, who then assigns the patient to willing assessors and providers. These willing individuals are often the ‘go to’ people who work well together. As a result, others who would like to develop experience with the MAiD process may be inadvertently excluded, as was the case of the following participant:
So, you have these pairs of teams and I think it speaks to the powerfulness of the experience. You need to work with a team that you're trusting in. Right? But there's an interesting sort of dynamic with that because, if you're a primary provider and you have a secondary person you use all the time, then you're just going to ask your secondary person. P2
In summary, participants cited the importance of teamwork both to support a seamless MAiD process and to support those involved in this impactful experience. However, the ability to work within a team where relationships were well established had benefits beyond mutual support. It also facilitated the seamless organization of what was potentially a highly complex process.
Processes: patient-centered aspirations in a complex system
Participants in this study described the complexity of facilitating a MAiD-related death. This complexity developed, in part, from the desire for a patient-oriented process. Participants recognized that MAiD would be the final act of healthcare they would perform for a client and that it would occur in a client’s last moment of life. This led to an intense desire to get the MAiD process ‘right’ and to provide the most person-centered care in the limited time that clients had left. For example, one nurse contrasted her previous practice in hospital to her current practice in MAiD using the analogy of a wheel and spokes. In her hospital practice she was the wheel and her patients were the spokes; in her MAiD practice that was reversed. However, this was a difficult aspiration to accomplish within a system that was generally not oriented toward providing patient-centered care. The achievement of such a patient-oriented perspective was plagued by difficulties.
This patient-centered perspective meant that nurses prioritized a MAiD-related request and/or provision over other duties. “I will be dropping everything else that I’m doing when we have a MAiD case. It doesn’t matter what other priorities we have on the go, and I have lots of priorities because I’m the practice lead for a few areas.” P2 Priority tasks in a MAiD situation included assessing clients in a timely manner, coaching and educating clients and their families through the decision-making process, and most importantly, organizing a time and space for death in accordance with patient wishes. In some cases, this prioritization was driven by health policies that stipulated that patient requests had to be addressed within a specified time frame (typically a short one). In other cases, it was driven by the urgency of the request because clients were at risk of becoming incapacitated and then would not be able to provide the requisite final consent.
Once a request for MAiD had been initiated, nurses had to perform these priority tasks within systems that were organized to accommodate MAiD to varying degrees. This rural nurse spoke of the disruptions of continuity of care of caused by the MAiD care system. “The client goes to their doctor, he refers to the MAiD steering committee, and I don’t know who those people are, they refer to my supervisor and it comes back to me. This is probably a patient that I already know.” P39 In contrast, a seamless system included the presence of an organized referral system, willing MAiD assessors and providers, continuity of care with the existing system, ready access to MAiD-related paperwork and patient records, and a physical space within which to provide MAiD. However, even with all of these factors in place, the system could quickly become overwhelmed when a number of patients were requesting MAiD at the same time. For example, many patients and physicians preferred to schedule the death in the evenings or on weekends. This could prove challenging for MAiD providers, particularly for those who were engaged in MAiD as part of their regular Monday to Friday workload. One nurse described how she eventually had to set boundaries around her time. Even though she was supportive of MAiD, and was committed to its accessibility, she admitted that she did not want to spend all of her weekends providing MAiD.
Nurses also became overwhelmed when they were the only providers willing to engage in MAiD. One nurse practitioner shared that she had become the ‘go to’ person because the physicians in her community were not willing to perform MAiD. She was not sure whether this was because of moral reasons or a lack of adequate financial remuneration. But, she was quickly coming to the end of her emotional resources as a sole provider with limited support.
Participants also described having difficulty accessing patient records for their assessment process. This was particularly challenging when requests were urgent or when assessments were conducted over holidays. Further, there was little agreement about the amount of background information that should be provided to, or shared between, independent assessors. Physical space in which to provide MAiD could also be challenging, particularly for those patients who chose not to have MAiD performed in their home. In some cases, institutions where MAiD could occur (e.g., hospital, residence, or hospice) had policies that prohibited patient admissions that were solely for MAiD; however, nurses suggested that this accessibility was improving.
The ability to negotiate responsibilities was also an important part of system capacity. This was particularly relevant when there were dedicated MAiD teams. For example, one participant described how challenging it could be to decide whether a client should be referred to social work or to the MAiD team if a client expressed a wish for a hastened death. This was particularly the case if nurses did not have the time for the in-depth conversation that would enable them to better understand the intent of the request. Without this understanding, it was risky to do an immediate referral if the client was seeking support and it was risky to not do an immediate referral if it could be interpreted as limiting accessibility. Once a MAiD referral was made, it could be difficult to distinguish between the care responsibilities of regular providers and MAiD providers:
So, it’s been a bit of a challenge to delineate what we’re doing in relationship to the request for assisted dying and what normal care still continues to be. So, that’s just a lot of conversations and we go and we meet with teams to say this is our bucket and this is your bucket and we’re all playing in the same sandbox to support the patient, but we all need to help each other. P3
Once a MAiD request had been confirmed, and a time set for provision, nurses were also responsible to organize the support individuals, such as the IV team or pharmacists. In some cases, the IV team required 24 h advance notice to accommodate workload and conscientious objectors. Throughout this process, participants were confronted with complex organizational tasks, within systems that supported those tasks to varying degrees, and with the expectation that they would do their very best for this patient’s final hours.
Specific legislative requirements added a further layer of complexity to the system. For example, the legislation requires that one of the two MAiD assessors must also be the MAiD provider. However, in a person-centered approach, patients can indefinitely prolong the time between assessment and provision. This delay can have a number of implications. It might mean that the client presentation changes since the initial assessment, as described by this participant:
About a month after I saw her for a secondary assessment I realized I've now become her primary provider. But because it's been so long I don't know whether to sign the Form C (clinician assessment form) or not because she actually doesn't have intolerable suffering at this point in time. She goes out for lunch every day with her friends like she's always done. But what happens if next week things turn upside down for her? Somebody else is going to have to come in and do the whole secondary assessment again. You know, without a system in place, it just makes things like that complicated that don't need to be complicated. P30
The participant in the quote above found herself becoming the provider rather than the secondary assessor, but at least she was involved in both. In other situations, nurse practitioners were expected to be providers when they had not completed either of the original two required assessments. This usually occurred when there was a long delay between assessment and provision and the original assessors were no longer available. This placed these nurses in a difficult position, particularly if their assessment differed from the original assessment.
An additional legislative complexity involved the paperwork associated with a MAiD death as well as the coroner interview required post-MAiD in some jurisdictions. This paperwork became more complex with the new reporting requirements introduced by Health Canada in 2018. Nurses described having to endure these reporting requirements right after an impactful and exhausting MAiD administration. The most troubling aspect of these new reporting requirements was the need to defend one’s actions, similar to what one might do in a court of law. The legality of their participation was in question as described by this participant:
The sense is that we have to prove that what we did was okay and that it was right. Our fear is that they're going to challenge us or ask a question that we won't have an answer to. That will put us in a position of feeling like, "Uh oh. What did I do now?" The new legislation [reporting requirements], make it worse. P30
This same participant went on to describe the ironic nature of the self-reporting process that entailed grading one’s diligence in following the legislation:
It is a three-page table that documents in a grid format how we're going to get into trouble if we do things wrong. I mean, that blows my mind, to be honest. I'm thinking, "Is this really necessary? I'm not planning on doing anything wrong (laughs). Why do you have to grade it?" It is a bit bizarre, you know. Not having done due diligence for foreseeable death is a score of 4 which means you get reported to your college. There are some 5s that mean you get reported to the police. But you think, "Hmm, okay. So, if I have provided this service to someone who shouldn't have qualified under the law and who wasn't actually dying then I essentially killed them. That's reported to my college? That should be murder, right? P30
In this anecdote, the participant shows her struggle with the rules of a complex legislated and reporting process that determines the line between assisted death and murder and takes little account of her moral commitment to doing the right thing.
For nurses, the end result of trying to accomplish impactful patient-centered care within a complex system was excessive workload and emotional burden. This resulted in some nurses setting boundaries around their MAiD practice:
I don’t find the provisions so emotionally draining, but it’s more the logistics and it’s a lot of work. The logistics of filling in 16 pieces of paper and making sure they’re all correct so you don’t get into trouble because the consequences are pretty significant. Then there’s organizing the pharmacy, going to pick up the medication, and organizing with the family, organizing with the nurse. Like, there is so much that goes into it. And that part can be so draining. And making it all happens as it should, you know, so that everything lines up. So, I think it’s important not to do too many cases. And that’s what I’ve been focusing on, making sure I’m not taking too much on. P25
This nurse was choosing to set limits on her MAiD-related practice. But for other participants, the cost of working within a system that did not adequately support them was simply too much. The risks of not providing good care or of running afoul of the legal system were just too great.
“Working in this haphazard framework you worry that patients are going to fall through the cracks because, you know, we all have busy worlds. Half of the practitioners I work with on an every-other-day basis say they’re not going to do this anymore.” P30.